You are here

some - good - news and reassurance

Categories:

Hey, guys, hope everyone's fine.

 

I don't post here for a long time but i'm always reading the threads. This is a great group and i'm so greatful to have found cml support when i was first dx. Even though i'm not a british citizen, people here were (and still are) so helpful that i made cml support UK "my group".

Well, i'm now almost 3 years and a half into treatment and my pcr is 0.0032% IS, so i'm in great place. I have few side effects and live a pretty normal life. I still get anxious by the time of my appointments, but it doesn't las long. Cml is part of my life, but it doesn't control my life anymore. For those who don't know me, i was dx with 260K WBC, 8.1 HB, 650K platelets and a huge spleen, 3% blasts and 8% basophils. I failed gleevec very early (9 months) and now i'm taking tasigna for more than 2 and a half years. I never looked back and here i am: living life. If you're newly diagnosed and not in a great position, there's hope. You don't need to believe in god or anything, you just need to believe in you and don't complain. We lost much time complaining and worrying but life won't stop. it's better to put your chin up and live life. it can be good. Cheers.   

Hi there Lucas

 

Muito obrigado for your excellent post and your reassuring advice.  It's such good news that your PCR is now so low - I read all your posts about your problems with Gleevec, your resistance to it, the mutation tests and all you had to go through.  Your ride on this crazy CML roller coaster has not been an easy one and I am so glad that you have such a low level of residual disease.

 

Your post brings so much hope to those of us who don't respond as fast or meet the guidelines (unfortunately I'm still not at MMR but trying hard).  It goes to show that a positive attitude works wonders.  For now, I have decided just to enjoy life as much as I possibly can and there are days when I don't think about CML at all (even though the daily tablet is a reminder!).  But I still get nervous about every new doctor's appointment, and every slight pain or twinge in my body makes me wonder whether the CML is coming back.  Hopefully with your wonderfully low levels of disease this concern is all but gone for you.

 

I hope to visit Brazil one day, CML permitting.

 

With best wishes from South Africa

 

Martin

Hey, Martin!! Thanks for the kind words. I know that most of us wait for that big fat 0.1% to live life, but it doesn't have to be like that. Life is happens all the time. If you're feeling good you must have some fun (just remember to take your medicine everyday). Last year i had my first international trip since my cml dx and it was great. You'll be welcome in my country WHEN (not if) you come here. Good luck, mate!!!

HI Lucas,

thanks for your positively uplifting post.... so glad you continue to have such a low PCR result - 

my best wishes as always,

Sandy